Been a while - Florida + Caribbean pics!

** There are lots of pictures in this post. Hang tight! **

Looking at my last entry, I am almost slapped my own face. Wow. It was for Christmas. Ahk. Sorta feeling like a bad person. Let's just say, life has been busy? Lame excuse or what?

Really, I felt like I started this blog to keep friends and family updated on Piper's health, and I suppose her health is doing really well... there isn't as much to talk about ;)

But really, life has been busy! I promise. Just to get it out of the way, health wise, Piper has been great. No health worries whatsoever. She had her blood taken in February and her neutrophils are still around 0.2, which is almost nothing. The hematology team at BCCH isn't too worried. We will have a cardio and heme check up for Piper on May 3rd. Piper will get her usual echo and ECG and then she'll get some blood work done. Really, it will be a pretty straight forward check-up.

We are hoping to see that in her heart, there has been a shrinking of the muscle bundles that were present last time. We want them to either shrink (and eventually disappear) or to grow at the same rate as her heart (and also, eventually disappear). I do really feel, even if this echo doesn't look all that promising, that everything from this point on will move so slow. They aren't going to do anything drastic, just keep watching it. I am fairly positive they will send us home and either see us again in six or 12 months.

As for her blood and autoimmune neutropenia, we are hoping to see it also slowly disappear in the next little while. The hematology team has always said that it tends to go away around 2 years old, and Piper will be 10 days shy of 2 at her next visit. Again, I have a feeling they are going to just keep an eye on it, as it's nothing too serious, and wait for it to go away. She has been able to cope through flu season and has fought off some serious colds, too. I am not too worried in that regard, but I would like to see what happens with this... I kinda don't want to even think about it anymore, even though it hardly ever effects our day to day lives.

Otherwise, Piper is a happy toddler, content to play on her own and with others and is a pretty good eater (though she would be happy to survive on cheese, yogourt and fruit for the rest of her life). She is trying lots of words, some in english, some in alien-speak, but we can communicate pretty well. She still uses her signs for lots of things, but has dropped some, like "cat" because she can pretty much say it now. Right now, her favourite things are:

• playing with her baby doll, and all it's accessories (oh my goodness! It's so cute)
• reading books, anywhere and everywhere
• getting a hold of anyones cell phone and figuring it out (within minutes she'll have the thing reconfigured... promise)
• trying to dress herself, or just pulling clothes out of her drawers and layering them on her head
• trying on shoes. Anybodies shoes.
• drawing with felts or pens (she has an incredible grip on that writing utensil, putting most first graders to shame!)
• eating breakfast with Daddy
• pestering the cat (she still loves the cat so much, and I even think the cat is slightly warming to her... slightly.
• riding in the car, and singing her own songs.
• pointing out things on the road: "dog, car, wow!"

We are amazed every day. Yup. Every single day. She is turning into such a great little kid. Oh man. I could go on and on, but I think you get the point ;)

In other news, Matt got a great new job, at a place in Surrey that makes stainless steel bakery equipment (I know, sounds random!). But the best part of the job is that he is in the shop about 50% of the time and on the road 50% of the time, fixing equipment all over the place, from North Van to Chilliwack. He loves the diversity and all the new people and especially something new. His employers seem really great, and so far, has been the best change for him. Seriously. He got part of his soul back. He starts at 8am, which is so awesome for our family. We can sometimes all have breakfast together! And he can even call and chat throughout the day when he is on a long drive.

I remember when he first saw the add on craigslist, he said, mouth hanging open, "this is my dream job". And it really does seem to be. Not the bakery equipment part, but the fact that he gets to trouble shoot and fix all sorts of crazy things, and then he gets to build things from scratch and meet new people and gets paid to drive around! He gets excited for work now. Such a good change for us all.

I have been working some more, too, and now send Piper to a friends daycare on Fridays, so I can have the whole day to myself to work, work, work. This has also been a good change for us, and I feel less stressed throughout the week. Things are starting to pick up and I feel as though I am going to shift my focus in the next little bit to bring in more families and kids. We'll see how it goes. It's kind of just an abstract thought right now, but I feel the winds of change a comin'! In a really good way. And nothing too crazy, don't worry.

But I really did want to share some of holiday pictures with you! In January, we went to Florida and the Caribbean for 2 weeks. It was amazing, as you can imagine. The trip of a lifetime.

In Florida, we went to Disneyworld (just Matt and I - even though we got rained on for a bit, it was so worth it!) for a day, and then lots of beach time as a family. We visited a few parts of West Palm beach, and generally took it really easy. We stayed with the family that I used to nanny for and it was such a nice time to just relax and take in a new place.

And here are photos from our Caribbean adventures. We stayed on our friends family boat, so we went with our good friends Sarah and Micheal (and their 2 year old boy), and Sarah's parents (who's boat it is). A very fun gang!

We hung around the British Virgin Islands and went to lots of different places. I can't tell you them all, but we got snorkel (first time ever!) and see lots of awesome sea creatures. We ate some local food and saw some awesome landmarks. We spent lots of time on the beach, or hiking or even a little bit of shopping. We went in the water every day, and went through so much sunscreen and still got burnt a little.

Piper did so awesome. She was a natural on the boat and was eventually brave enough to wander around on the bow even during mid-sail. It was such a perfect time to travel with her. I can't comment on all of these photos because they all have a story, but hopefully you'll get a bit of a taste of what our trip was like.

Merry Christmas to all.

Here is my attempt at a Christmas update. It's been kinda an amazing year, and there is lots to document, so it seemed silly to try to shove it all onto an 8.5 x 11 piece of paper. So this way, you can read as much or as little as you'd like.

As any parent can attest, your child takes up most of your life, and brain space. And this year was no exception to that. Our year was pretty much dominated by Piper and her many adventures.

The biggest deal for us this year was Piper's heart surgery. We waited and waited for it to happen, and it finally did, on March 25 of 2010. It went as smoothly as expected, with an excellent team of doctors and nurses at BC Children's Hospital. Piper recovered a touch slower than they thought, but we were still out of the hospital in one week, home just in time for Easter.

It was a pretty intense week, and looking back on it now, I feel flustered just thinking about it, but we had an unusual sense of peace and ease about the whole thing. We had great family and friends surround us throughout and we were so well taken care of. But upwards on onwards! All is well!

We've been in and out of the hospital this year for a few reasons, but one was that my Dad had a cancerous tumor removed from his liver, and just like Piper, he wowed us all with his recovery. He is in great health now, and coping well (though refuses to slow down and act like a retired old guy!). We also celebrated his 60th birthday in October, as a family.

In May, we all celebrated our birthdays with a big combined party. All good fun with lots of friends and family. It was a nice weekend in May, which was such a treat.

We got to take a few little trips this summer, one to Mayne Island to see my sister Sarah and her family, and one to Long Beach, and a few little beach trips in between. We kept it pretty simple this summer, trying not to spend too much money on summer trips, as we were saving up for a big winter trip... more on that soon :)

Early in the summer, I fully "launched" my business of graphic communication, which includes photography, graphic design and branding/logo work. I had been working at this for a while, but in June, I set it free with a great website. It was a lot of work, but it is now keeping me good and busy and I am loving all of it. This next year, I am hoping to continue shooting lots of weddings and portraits, but really aim at improving my graphic design skills. I also want to get a few more "post-production" clients, to work on their photo editing, which will maybe entail me getting a new, faster, shinier computer :) We'll see.

The fall involved getting back into a much needed routine, and getting used to life with a toddler. We got some family photos taken by a friend of mine, as Matt and I celebrated our five year wedding anniversary. We treated ourselves to a swanky night out to see the Lion King live show.

We started a reno on our bedroom and my office: adding some wainscotting and sanding the hardwood floors and painting. We are still working on it, but it's coming! The only thing left to do in this house is our bathroom, and you better believe we're already thinking up ways on how to re-do it! We've got the gorgeous bathtub [in storage] to prove it!

I like our house a little more every time we put some blood/sweat/tears into it. It's a nice little home, and we are learning how to really take care of it all the time.

Another big thing to happen in the fall was that Matt left where he was working (cabinet door making shop). It seemed his work place wasn't a great fit for him and it was started to really effect him in ways that work shouldn't. He left before he could burn any bridges, and with his dignity still in tact.

It was a bit of a bold move, as he didn't have any work lined up next, but we decided it was better for him to be hungry than crazy. Of course, he fell into a nice temporary job of working on a home reno project on Pender Island for about 5-6 weeks (4 days working, 3 days at home), having a great time working with some of his best buddies. It was like boys-only summer camp over there: they dug holes, hammered nails and ate spaghetti all day long. And got paid for it. Come on. The only thing missing was arts and crafts time.

He is currently waiting on a few job offers to come through. We are trusting God to give him something that is going to lift him up and really fuel his desires. He's got a lot of talent and dreams, we are still just working on honing them to find what suits him best for work.

In November, we went back to the hospital for a check up for Piper and they found that there is a slight chance that they may have to do surgery again in the distant future. And her neutropenia has yet to clear up and ship out, too. We are playing the waiting-game yet again, and just waiting to see what her little heart is up to. There is nothing we can do, and there is nothing Piper can't do. She is as normal as kids come. You would never be able to tell that she's had open heart surgery. Except for her scar, that is continually improving.

So for now, we continue on as usual, just waiting to see what gets put in our path next. We'll head back in April for another check-up to see what is new.

And now, we are into the Christmas season. It is so lovely. We have slowed down our pace of life and are really trying to live as simply as we can these days.

On January 5th, we are taking off south for 2 weeks to visit Florida and the Caribbean British Virgin Islands. Ummm, yeah! We are pretty excited. We've scaled back our Christmas fun (as well as our summer fun, as mentioned earlier), so we can really enjoy our trip as much as we can!

In Florida, we will visit with a family I used to nanny for before I was married, and we'll hopefully just play on the beaches and see some sights. Matt and I might even dare to spend a day at Disney World, just the two of us.

Then off to the Caribbean for a week, with some friends of ours, to sail around on their 45 foot long sail boat! Oh my goodness. Wake me up! We are thrilled and really feel like this is a once in a lifetime sort of thing. I want to snorkel, see some cool geological formations and find out some cool historical facts while we're there. Everything else is a bonus.

So that has been our year, as scattered as it may seem, we've really enjoyed it all: ups, downs and everything. We eagerly look into 2011 which will include a way cool holiday for us, maybe finishing a home reno, planting a bigger and better garden, and even thinking about adding another little family member to the mess.

Again, like in all of life, we are taking it one step at a time, and whatever gets dealt to us, we take and work with. I am not planning anything, I just taking it as it comes. That is one thing that being a mother has taught me: just roll with it. I am tired of trying to control the wind. It's just not going to happen. So I might as well enjoy it.

We send you our warmest holiday wishes and hope you can spend this time doing something that you love with people you love even more.

Merry, merry Christmas to you all.

Frances, Matt and Piper.

Christmas time at Oma and Opa's! (early, to celebrate with everybody)

Piper decided to give everyone a good show.

Fun times with Uncle Jeff!

Lots of cool presents for all! (it's an old school 8mm movie projector)

Piper getting her first box of Duplo! (she loves it!)

Having a nap time on Daddy... she has been teething bad. Getting her 2 year old teeth already! She's almost got 20 teeth now. Ouch.

Found the wall mud. She decided the table needed to be filled in a bit.

Super baby.

Christmas time with friends! Had a blast with Colton and Abigail

The girls and their blankies. Don't you dare try to take those away.

Pig puppet.

They both had so much fun getting teased by Colton

Pig tails! First time ever! They only lasted a few minutes, but you can see how cute they look!

She loves having a sink full of water to play with.

Here comes the sad face...

Totally pulling this for effect...

Trying to peek out of one eye, to see if this is working.

Fun giggly times with Daddy.

She loves playing with these cat toys. Thanks Gram.

Normally can't get a smile and the toothbrush in one shot, but here it is! She does not like brushing her teeth.

Alas... she is getting so grown up.

Dealing.

I find myself concerned about Piper's health more these days. I really don't want to be, and I honestly feel like I don't need to be. But I am. I'm her mom. I guess it's my job.

Timing is everything, I guess. November never feels like a great month for me. Maybe I feel a little more hit by this new news just due to the timing.

If I am really honest with myself, I am secretly screaming inside that I don't want to do surgery again. Everevereverever again. As much as I glorify the experience we had, I don't want to do it again. I just don't (insert pouty face here).

I need to keep telling myself the same thing I keep telling other people: there is a chance this might not happen at all, and all of this will blow over.

I have to keep remembering that. But I know that we will always be a little worried now that something might come up. Before, we were pretty confident that this one time fix should have fixed everything, but I should know better. Never underestimate the power of that little heart of hers.

I am slowly and surely giving this up to God, but it's not as easy as all that. There is nothing I can do or not do. That's the best part and the worst part.

Matt is in his third week of work away on Pender Island and so far it's been pretty good. This has been the first week I have really been feeling alone, hence the gloomier thoughts, hence the moody personality (can I blame that for my bad spelling and slow typing speed, too?)

He brought home a huge bucket load of apples last week and we've made about 30+ litres of apple sauce, which has been great! Bonus. And he gets to work pretty much as many hours as a human body can take. Always fun.

Knowing that this is not permanent really helps. This is not a normal way to live a life. I have a new appreciation for those single moms out there. This is totally possible, and somedays, even easy. But this is not desirable. I can see an end in sight, and can focus on that.

Otherwise, I am really busy with work and doing my best to keep up. That balance is really feeling strained now that I really have to work to find extra time at home, between naptime/bedtime.

And a new feat for us all is going soother free! Well, I mean, for Piper of course, but we are all kinda journeying through it.

We have been sorta trying to get her off of her soother for a little while, by cutting it out of the daytime, reserving it only for naptime and bedtime and she was doing pretty well. Until something switched and she just needed it all day long for some reason.

Anyways, then something else happened. The pumpkin patch.

We went with a long lost friend of mine from high school (must check out her blog - such good stuff goes on there all the time!), and some time between sharing popcorn with this little monkey-boy on the hayride

and collecting her cute little pumpkin, her soother disappeared.

I am calling it divine providence. Whatever it was, it worked. She was mad for a few days, and nights and naptimes were a little trying for a while, but she got over it. She coped, and we are all surviving without her soother. And now that it's gone, I am so glad to be rid of it! One less thing to worry about. I am hoping this will help her to develop a few more of her words, too, which seem to be slow in coming, but I know every kid develops at their own pace. Right now, I think she has more signs than she does words.

She can sign : cat, dog, bird, please, poop, change, cheese, eat, milk, more, water, bath, hot.

She can say: yeah, no, up, mommy, dadda, all done (aaaah-daaa), hot, and lots of other words from foreign languages yet to be discovered.

Alas, this post is getting garbled and nonsensical. And I using words like nonsensical.

I should probably go to bed. No fear. All is well on this front, just processing lots of life things at the moment, but usually able to take it all in stride.

Funny odds.

Do you know that every child born has a 1/100th of a chance to be born with a heart defect?

Well, they do. In my mind, that is rather large. I understand why it happens, as the heart is one of the first things to develop in that wee little baby, and it is not a very easy process, so error tends to happen.

Our next baby (whenever that happens) will have an increased chance of 3/100 to be born with a heart defect. I can't speak for my babies babies, but I am assuming it will be higher still.

Not cool. Not fun. But all very fixable these days.

Today, when we were at BCCH, we were told that there is a 50% chance that Piper could have to have surgery again.

After an lengthy process to get to her echo, the results showed that there was still some muscle bundles in her right ventricle, which could eventually make her heart work harder than it needs to.

Settle down, now. The doctors are not worried in the slightest. Really, I could see it on their faces; calm as medical cucumbers. Apparently when the surgeon was in there operating, he could see these muscle bundles, as Piper had grown quite a good amount to compensate for her strange blood flow. He chose not to remove these ones because it would have been too much on her little heart to remove such a large mass of goods, as that would up her chances for failure. He believed there was a good chance that those bundles would dissolve or stretch on their own and possibly not cause any problems. It was worth the risk.

But now, after looking at her heart 8 months post-op, they see that those muscle bundles are still around and now we just wait to see what they do. It turns out that they change the pressure from the heart to the lungs, as one wants the pressure in the heart to be around 30 (don't know what kind of units?) and right now Piper's an over-pressurized amount of 40-50. That number is totally fine and they don't see any issues with that (Dr's exact words were "it's not trivial, but it's not major") , but if it were to go out higher, say to 100, then that would be something to worry about.

Yes, they said that there is a chance we could do this all over again. The repair would be quite straight forward and they would do it later in her life (I naturally assumed like at the 5 year mark? Just a guess), but it could happen. BUT it could also not happen, just as much. Like I said, 50/50. There is just as good a chance those muscle bundles will shrink away as her heart grows, or stretch out, giving her heart more room for good blood to be swooshing in and out of there.

Or, the muscle bundles grow and make it more and more work for Piper to breath, leading to shortness of breath during activities etc.

The doctors stressed that there was nothing to worry about, and even if the muscle bundles did grow, it might only be a shortness of breath issue, not a life-or-death issue.

I am trying my hardest to take the doctors advice and not worry, but, as all mothers know, you can't help but worry a little. A flurry of things flash before my eyes: the echo 6 months down the road, when Piper is almost 2. The meeting with the doctors telling us the news. Us going home with said news and dealing with what we've heard. I hate how my mind always flies to the worst scenario, but it does!

As of right now though, Piper is doing just fine. Really, and honestly. If you feel her heart with your hand, you can still feel a slight murmur (swooshy, frothy fluttering), and when you listen to it, you can still hear a distinct murmur, but the noise level doesn't really have anything to do with anything... but just saying, she does not have a lovely lub-dub heartbeat like you and me.

She was sedated for her echo which was the best idea ever. She never slept from it, but she was so much calmer, and kinda drunk (which is always funny, regardless of age).

Hematology had nothing new to tell us. Her neutrophils are up a tiny bit from 0.1 to 0.41!!! Wow! They should be somewhere around 7-8 I think, in a child this size. Yeah, she definitely still has this auto-immune neutropenia. Big time.

Our hematologist said that we don't really need to see him again for another 6 months (as did cardio... did I say that?), just with one blood test in three months done locally. He is really hoping to see something change around the 2 year mark, which is just before the next time we see him. I am not counting on much, though he did clearly say that it is very unlikely that this will be her normal. This is not normal, and she should grow out of it soon. Or else???

And also, that the fact that she has been sick for a while has nothing to do with her lack of neutrophils, but only her lymphocytes, which apparently are fine. So I will stop using that as an excuse for her being sick all the time. She is a toddler, it's just the way it is: always having a runny nose and some sort of cough.

Gosh, this is getting long.

Wrapping up! I will try to post a little more often, as it does sorta help this whole process... but for now, here are some pictures of Piper I am still unburying from the summer months.

Loves that free tricylcle... even when it tips over almost every time she plays on it.

Fun times at White Rock beach.

The infamous underwear snatcher. And yes, I have a ridiculous selection of undies, but Piper will try to put them all on her head. There is no point in organizing my drawer anymore because it brings her such joy destroying it :)